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ALS Nexus: Ensuring Care for All
Dr. Ileana Howard is the Medical Co-Director of VA Puget Sound, an ALS Association Certified Treatment Center of Excellence, and will be joining us at our ALS Nexus conference to share her insights while exploring actionable steps to dismantle barriers to access, from advocating for policy changes to fostering community partnerships, to ensure everyone living with ALS has access to state-of-the-art care.
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Nutritional Considerations in ALS
ALS presents its own set of nutritional challenges that must be addressed when considering what makes up a healthy diet, and these challenges change as the disease progresses. As we approach the end of National Nutrition Month, we wanted to take a look at some of the many nutritional needs for people living with ALS and how they are sometimes different.
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Controlling What Can Be Controlled: Palliative Care
Paying attention to the big moments of life, while not forgetting to pay attention to the little things, is what palliative care is all about. By definition, palliative care is a whole-person approach to care that focuses on quality of life, relief from pain and symptoms, and reducing emotional distress for a person living with a serious illness or disease like ALS.
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Feeding Tubes: 10 Things to Know
In most people’s journey with ALS, they will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health.
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Better, Together: The ALS Multidisciplinary Care Approach
We know multidisciplinary care for people living with ALS and their families is proven to extend survival and improve quality of life. At the ALS Association, we work with the best ALS physicians and clinics across the U.S. to make sure people living with ALS have access to the best specialized care no matter where they live. Our Certified Treatment Centers of Excellence™ and Recognized Treatment Centers™ provide people with ALS compassionate care in a supportive, family-oriented atmosphere.
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Tips for Dealing with Cold Weather for People with ALS
People with ALS already experience stiff muscles in their hands, arm, legs and feet, and winter temperatures can make this situation worse. Cold weather causes muscles to contract and become tight, which can be painful. However, people living with ALS can still enjoy this time of year. Here are some tips on dealing with cold weather for people affected by ALS.
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Katie Adams: Living with ALS, In Her Own Words
"I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure." Katie Adams is an advocate for people living with ALS, like herself.
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Tips for Having an Enjoyable Holiday Season
For people living with ALS and their families, the holiday season can bring its own set of challenges, both physical and emotional. But the season can still be a time of togetherness, peace and joy. Here are some suggestions to help manage changes and enjoy this holiday season.
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Learning From Others: ALS Caregiver Resources and Support
No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.
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“She’s Crazy Strong Inside”—A Young Woman’s ALS Caregiver Journey
When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”
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Education and Training for ALS Caregivers
For someone facing the challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Finding accurate and timely information can play a key role in equipping those impacted by an ALS diagnosis with the skills they need to provide the best possible quality care.
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Helpful Advice from One Caregiver to Another
Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
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“I’ll Do This for You”—A Caregiver Story
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.
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10 Ways to Help a Family Impacted by ALS
November 1 marks the beginning of National Family Caregivers Month. There are many ways to help caregivers and families impacted by ALS. The ALS Association put together a list of ten ways to make a difference in the lives of family caregivers.
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Finding Help and Support for ALS Caregivers Nationwide
We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.
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Perspectives on Physical Therapy from a Person Living with ALS
ALS is a very different disease. Therefore physical therapy treatment has to be different than what you would consider typical physical therapy. You can't fight it off or beat it with exercising. In fact, the wrong kind of exercising can actually make things worse.
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The Power of Partnership and ALS Care
Dr. Tawfiq Al-Lahham is a neurologist with a subspeciality in neuromuscular medicine. We discuss with Dr. Al-Lahham how expanding multidisciplinary care is helping to make ALS a livable disease for everyone, everywhere until a cure is found.
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